How research directions and patient experiences connect to the terms ME, CFS and future names

[Hutan]

That’s very interesting that EBV’s importance may be a mirage. But that’s a really big and powerful mirage given, for adolescents, the phrase “she/he’s not in school due to glandular fever” is essentially synonymous with “due to me/cfs/PVFS”.

And then there’s the big surge that’s come with COVID. Don’t think we’ve seen me/CFs surges during unusually bad flu seasons, for example.

We see ME/CFS after a wide range of viral infections (e.g. Ross River Fever, even Ebola), and indeed even after some bacterial infections e.g. Q fever. It may even occur after protozoal infections e.g. Giardia. We have a thread discussing the various infections that have been associated with ME/CFS: Pathogens associated with triggering ME/CFS

Also, people can have one bout of a disease e.g. Covid and recover fine, and then have another bout and get ME/CFS.

This speculation, and its implications, are why I really REALLY want to see the data contrasting the genetics of people with ME/CFS and those of people who walk away within 6 months with PVF only.

I had ME/CFS when I was 10, for less than a year, and recovered completely. When I was in my late 40s, I got ME/CFS again and have remained ill. My two children got ME/CFS at the same time, one recovered over a couple of years. The genetic difference between people who have months of PVF and people who remain ill with ME/CFS may be subtle. It's possible there is a substantial contribution from environmental factors.

 

[Silip]

Perhaps! Except, it only applies after certain viruses, not just any old virus. PwME/CFS, before they got ME/CFS, seemed to have no problem with this reset when they got sick from flu etc prior to that.

Which might bring in age-dependent instability of hypothalamic co-ordination or stochastic elements.

This speculation, and its implications, are why I really REALLY want to see the data contrasting the genetics of people with ME/CFS and those of people who walk away within 6 months with PVF only.

That reminds me of something I’ve actually picked up in part from Dr Putrino – even though I don’t generally agree with his research – namely the concept of ‘multiple hits’.

Perhaps, for some people, developing ME/CFS requires several factors that affect – let’s assume it really is the hypothalamus.

I, for example, always took a bit longer than others to recover from severe infections; I never had PEM, but I was always weakened for longer. In addition, many years (6 and 8 years) before I developed ME/CFS, I suffered two clear cases of concussion; in those instances, too, it took me longer to get back on my feet. The symptoms were very similar to those of ME/CFS, apart from PEM, I even had Brain Fog and problems with recalling words, although never quite as severe.

What I find most interesting, however, is that even after my first Covid infection, it took me four weeks to recover properly, although I managed to get through it without developing ME/CFS. It was only after the second infection that I clearly developed PEM, and after five months I had an EBV reactivation which worsenend me and made me severe.

I’ve started to wonder whether I would have developed ME/CFS even without the EBV reactivation, or at least without having two Covid infections and the EBV reactivation within 15 months. Maybe it wasn’t just that one virus, but all of these factors combined that were needed for me to develop ME/CFS?

And perhaps it is similar for other people, in that ‘random’ events in the past they may not even remember – such as past infections, cases of "poisoning" or traumatic brain injury – make them more susceptible to developing ME/CFS. Or indeed, things that rapidly affect the immune system and/or the hypothalamus in quick succession – such as reactivations during infections, accidentally doing a vaccination whilst suffering from an infection, small infection during traumatic brain injury or whatever else.